The ganglion is the big bundle of nerves that the 3 branches of trigeminal nerves exit from. My fingers are crossed for you as well.
JulieC said:
Hi I'm only new and this is my first reply but I've been suffering for a few years and tried all of the medications mentioned above plus some more. My best pain relief came from a combination of Lyrica and carbamazepine, however I've now been drug free since August following my consultant giving me a pulsed radiofrequency stellate ganglion block injection. I don't understand the science behind why he injected there and not into the trigenimal nerves but I can't say I care either as I had a few months of blissful pain relief before it returned earlier this month. I decided not to go back on the meds as I found it hard to work full time with the side effects but had my second procedure today...I'm just hoping the results will be as effective or better....fingers crossed! :)
The problem with Type 2, TN2, Atypical TN, Atypical Facial Pain, ATN, whatever you want to call it is that it really is a label that covers many different kinds of pains that occur in/on the face. It really is an amorphous syndrome of symptoms as described by the patient. The Johns Hopkins Trigeminal Nerve Center will not treat patients with Type 2 symptoms, that should tell you how difficult it is to treat TN2 patients. They just help the TN1 patients who have the electrical shock pains. The trigeminal nerve distribution covers the face, some doctors will say you have something called TN2 whenever they hear a symptom of any pain on/in the facial area. They will then use surgical techniques used on TN1 patients to treat the TN2 patient. I have not seen any extensive studies (or even decent studies) on TN2 published. There are very limited studies published, regarding a very limited number of patients (literally 4 or 10 patients per study). The procedures carry real risks, as many on this website will attest to having suffered damage from them. I no longer trust the statistics that surgeons give regarding the success rates they have with TN2 patients as they are not backed up with their own written reports, it's all oral. Plus, when I had my MVD, there was no formal questioning post-op of how I was doing after surgery. No follow-up questioning months after the surgery by the surgeon or his office specifically about how I was doing. So I don't believe the surgeon's oral statistics he gave me. I am not saying that the rhizotomy/gamma knife/MVD don't work on patients with categorized as TN2 or a combo of TN2/TN1. I am just saying that there is no reliable statistics. And the statistics that are out there have a lot of problems attached to them, the worst of which is that the patients catagorized as TN2 have a wide variety of different symptoms and they are all thrown into one bucket.
Don, wow, I am impressed with your knowledge and understanding of TN2. I know this is a naive question as no one seems to know the answer but what do you think is the cause of TN2?
Mine followed Classic TN (did Classic TN cause TN2 by damaging the nerve?)
I am aware dental work can damage the nerve and cause TN2.
People like you and others who have TN2 without Classic TN and without dental work, what causes it?
I would guess that there are many different causes of TN2 pain. A lot of people mention problems with their teeth and pain occurring after a dental procedure. I do not think that a blood vessel compressing the base/root of the TN nerve is the only cause. I think nerve damage anywhere along the trigeminal nerve distribution can cause it. I had a root canal about 2 years before the onset of my TN2 symptoms which may have triggered it, I would not rule out out for me. I no longer trust anyone’s explanation for any TN2 pain. There needs to be a lot more formal research done.
for me, my pain dr guesses that I acquired an infection to the parotid glands (access via a cracked tooth); so many specialists missed my diagnosis & treatment, that by the time I got to her, she believes the prolonged pressure from the infected glands caused the nerve to be damaged at the point of compression. just her two cents… it’s the best explanation anyone has had for my bilateral TN2.
Mrl, your history sort of fits in with the theory that what causes the TN2 pain can come from any injury of the nerves of the face, not just a compression at the root of the trigeminal nerve. I say “sort of” because I don’t want to make assumptions about your case. Anyway, I have been through an MVD and a deviated septum operation for the symptoms and neither worked. The deviated septum operation a long time ago made the symptoms worse. I am sorry to hear that your sinus surgery did not work.
Assuming a person can control addiction/dependency, I find good old fashion pain medicine, the notorious narcotics, help the most with the least amount of side effects and appear to be the least potentially dangerous for the body too. The seizure medicines and anti depressant medicines I've tried change me mentally, make me feel sick in the head, and have dangerous side effects. I have chronic pain like the TN2 type, not the electrical shock type I've read about. Imagine that, pain medicine working effectively on pain. There aught to be a study done...
I was using oxycodone and receiving very good relief but I can no longer find a pharmacy that will sell it here in Florida due to the problems with abuse of the drug. Now I am using hydrocodone with less success, but it makes the pain much more tolerable and I am not sick in the head all day like I was with the anti seizure medicines. Mild constipation, but changes in diet take care of that for me. Euphoria goes away and pretty soon I just feel normal taking the medicine but my pain is considerable less. Without pain medicine, my main focus all day and much of the night is my pain.
I just recently went to a pain clinic specializing in facial pain. Met the best doctor ever. For over a decade I have been chasing dentists all over the state trying to fix what I thought was a tooth problem.
No more surgery for me. I was talked into an apicoectomy for my tooth. I take part of the responsibility because I was adamant with the dentist that the tooth was the problem. But other dentist refused to do surgery on it. Guess they knew better, unlike me. Then I was talked into sinus surgery hoping they could find the pain or it was referred pain from a problem on the other side of my face. Neither one helped. I had my tooth extracted too, still no help. I give up. Only pills for me from now on. A neurologist told me don't let anyone talk me into killing the nerves. He said he has seen too many people with drooping eyelids and sagging lips, and still have the pain! JMO Sorry you suffer with this. I don't think anyone can fully understand unless they live with it! The pain gets so strong it is hard to focus on anything else in life.
I also had sinus surgery in hopes of finding the problem. that was before I had an accurate diagnosis. btw, I agree about pain meds (I take hydrocodone). there are a lot of docs reluctant to prescribe due to massive abuse issues. but if controlled, they definitely take the edge off (they do for me).
I'm ATN ( type 2 TN) - head pain & nausea continually. My reading to date doesn't reveal any surgical type treatments that work, and the ( 3 ) neurosurgeons I've seen likewise didn't offer any joy. ( And warned of side effects as noted above.) I have tried all the usual nerve agents -tegretol, carbamazapine, lyrica... the list goes on... with no success at all. Currently on Cymbalta ( and have read the cautionary note from this website - no bad side effects for me, save I get tired in the pm's). It has taken the edge off a little. Say one point on the pain scale. I'm on a lowish start dose ( 30mg) so I'm hoping things may improve as the dose increases.... hoping.
I still take oxycodone at times for relief, or as I should say, to have a "normal" day every now and then, as you'd probably understand. Probably minimum of twice a week. And then it's the smallest dose I can get an effect from. Say 1/2 a 5 mg tablet every 2 hours.... not enough to eliminate the pain just change my attitude to it. So I can smile and laugh again!!! SOme days I take one 5 mg slow release oxy instead, but usually find by the pm I add a little 'normal' oxy.
Addiction: a year or so back I decided to go for a more functional life... ( you know, instead of living in my private house of pain ) and went on to oxy, slow release plus top up normal ( here, Australia, called endone). I had over 9 good months... dose tolerance develops over 4-8 weeks, so the dose was increased every so often. I was trying to pretty well eliminate the pain/nausea, and oxy did that. But can you see where this is headed?! In the end I was on 20 mg slow release 4 times / per day. Note this means a dose at 2 or 3 in the am...think you can skip it? No, you wake up feeling total crap. Further I found I had to keep taking the dose at regular times to avoid a certain truly awful mental malaise that came up mentally from behind... really disturbing until you take the dose. At each review with my doctor the dose went up.... constipation was beginning to be a problem... and my achilles tendons started to hurt like hell as I walked / ran. So I decided time to come off... which I did, cold. ( ANd that's another story). This is a long winded way of saying use oxy with care.... over time it will get to you, well it did me. I now use it as temporary relief when I've just had enough of everything. It takes a fair amount of self control to just suffer on a day to day basis until the weekend and oxy. This morning, Monday, I'm smiling and writing as I've taken a small dose - in fact 1/4 a 5 mg endone tablet, and it is just enough to let me function a bit better. Pain is there, but eased a little.
The addiction side was / is physical, your body adapts to it and complains if it doesn't get it. Mentally whilst it was and is nice to feel 'normal' and I guess that could be addictive, I am now so conscious of the narcotic's dark side that I can use it sparingly to maintain its effectiveness. ( There's no doubt narcotics are addictive when abused by the normal healthy public.) I am so happy that here it is possible to get oxycontin/done albeit in limited dose ( one month's supply at a time ). It maintains my sanity. I have tried morphine sulphate in slow release - not quite as effective for me as oxy and made me a little queasy. All the best to you. You have sympathy from a fellow sufferer. Craig.
I have yet to find a drug program that helps to any great degree either. Tegretol and trileptol just don’t help me. I will take elavil or neurontin for a day or two to get a little relief, but the side effects are really bad so I have to stop. Really it is just a trade-off of bad symptoms. My usual response to a case like yours is “have you had an MRI of the brain and trigeminal nerves?” and “What did it show?” I’m really taking it day to day myself. I took Cymbalta on a trial basis but did not even get a 1 point change as you already have. I hope it becomes effective enough for you for it to become another tool in your kit.
this is such a maddening disease; I really do hope you get some relief. early on, i printed out one of these “success stories” posted in this forum that sounded similar to mine. for months I kept it out & read it frequently just to keep up hope. I wish you guys better days ahead.
I just joined this site Sunday, and only now finished reading this thread of discussion. I've had only relative success with many of the above mentioned drugs after Dr. Janetta informed me his procedures couldn't help me. He diagnosed me with "A-typical face pain" and referred me to The Cleveland Clinic nine years ago. They tried a peripheral nerve stimulator, concentrating on my Mental Nerve six years ago, but it didn't take. The lead stopped a few millimeters from the terrible spot in my jaw. A neurosurgeon, Dr. Machado at The Clinic, offered to try a nerve stim that ties into my spinal chord. So far, my insurance company has denied coverage as it's too experimental for my problem. He is now appealing their decision. Have any of you had this done? This is becoming urgent, since an oral surgeon removed my last two teeth in December and must have nicked a branch of the Trigeminal Nerve. Terrible pain below my nose. Can't bite food and washing my mustache is horrid. His response?: "I didn't do anything wrong. You just have hypersensitive nerves." My doctors won't increase my medicine, as they are afraid of Ohio state regulations.. Fortunately, I found an acupuncturist who showed me some techniques that help when the 9-10-Level pain strikes.
Henry-
I am so very sorry. I’ve not had to resort to PNS, nut acupuncture did help me bring the pain down a few notches. I am currently searching for a local doc who will try me on a new product on the market. it’s called P-Stim. their HQ is in Indiana. you wear it on your ear, & the tiny electrodes work kind of like “pulsed acupuncture”. I tried a trial model last Dec, & it did help! they are just so new that not a lot of doctors have seen it or adopted it yet. I pray you’ll find some relief.
That's terrible Henry. I too have seen a large number of doctors that prefer to blame the patient and their "hypersensitive nerves", etc. instead of focusing on what next could be done. Good luck to you in relieving your pain.
That's a great idea Mrl. I am going to have to try that! I hope you are having a wonderful, pain-free day and many more to come!
mrl said:
this is such a maddening disease; I really do hope you get some relief. early on, i printed out one of these "success stories" posted in this forum that sounded similar to mine. for months I kept it out & read it frequently just to keep up hope. I wish you guys better days ahead.